People with disabilities

also known as: Adults with learning disabilities, Learning disabilities, People with a learning disability, People with a learning disability, People with learning disabilities.

A disability may be physical, cognitive, mental, sensory, emotional, and developmental, or any combination of these. Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions.

The aim of a JSNA is to improve the health and wellbeing of the
local community and reduce inequalities for all ages.

Some geographical areas and disadvantaged groups experience much
poorer health and greatly reduced life expectancy, and to reduce
these health inequalities requires tackling the wider determinants
of health. This enables people in vulnerable groups to have greater
control and increased ability to make decisions about improving
their lifestyle.

Adults with austistic spectrum conditions

Autism is a lifelong developmental disorder which affects the
way people interact with the world around them.

400,000 people are estimated to have autistic spectrum
conditions in the UK. Of these 160,000 are estimated to have
Asperger Syndrome. 70,000 are estimated to have a severe learning
disability.

Adults with a more severe learning disability have a greater
likelihood of having autism according to a
report published in 2012 by the NHS Information Centre. The
report combines data from the Adult Psychiatric Morbidity Survey
(APMS) 2007 with findings from a more recent study based on a
sample of people with learning disabilities living in private
households and communal care establishments.

The report estimates that the prevalence of autism:

Is 1 per cent in the general population

Is approximately 35 per cent among adults with severe learning
disabilities living in private households

Is approximately 31 per cent among adults with mild or severe
learning disabilities living in communal care establishments

Whilst the study comprised a relatively small sample with
limited geographical coverage (Leicestershire, Lambeth and
Sheffield) and did not include the institutional population, it did
include two distinct populations (people in communal care
establishments and people with learning disabilities), which were
not covered by the APMS 2007.

Information on the number and nature of autistic spectrum
conditions is highlighted by specialist organisations as a serious
issue in its own right.

A long-standing problem has been people with autism being
refused support because they do not fit easily into mental health
or learning disability services.

To improve access to and responsiveness of services, there
needs to be:

improved diagnostic services and clear pathways to care and
support

better access to mental health services where required, and the
provision of adjustments to meet individual needs

greater awareness of autism among healthcare and social care
professionals.

According to the NAS 'I Exist report' (2008), only 15% of adults
with autism are in full-time paid employment and 49% of adults with
autism still live at home with their parents. Of those adults who
live on their own, 44% say that their families provide most of
their support.

Based on national prevalence rates, it would be expected that
approximately 3,120 Northumberland residents would have an ASD,
2,770 of whom would be aged 18 and over.

From local authority data, approximately 400 adults (over 18
years) are known to services (250 in Community Learning Disability
teams and 150 known to Mental Health teams). This suggests that
there are many more people living in the community with ASD who are
not receiving formal help.

The number of adults in Northumberland who have a learning
disability and ASD known to social care is 250. 149 of these people
have a formal diagnosis of ASD, 105 of whom receive services in
addition to a care manager. Out of the 101 people who have
suspected ASD but no formal diagnosis, only 19 have no other social
care services other than a care manager. The majority require
additional services.

The number of children and young people (aged 16-20 years) in
Northumberland with ASD completing the transition process to adult
services is thought to be about 105. The number going through
transition is likely to increase in future years as the effect of
consistent diagnostic guidelines is felt.

People receiving social care services in Northumberland were
surveyed as part of the Adult Social Care User Survey in England
2010-11. Overall views were very positive: overall satisfaction
with the care and support people were receiving was 93% - either
extremely (31%) satisfied, very satisfied (32%) or quite (30%)
satisfied.

This is reflected in the view that some key aspects of quality
of life were mostly in place:

People described their personal care positively: 53% feeling
able to present themselves in the way that they liked; 41% feeling
adequately clean and presentable.

64% of people felt they got all the food and drink they liked
when they wanted it; 30% felt their food and drink adequate.

60% felt their home was as clean and comfortable as they
wanted; 35% felt it was adequate.

62% of people felt as safe as they wanted; 30% felt adequately
safe.

However, views on overall quality of life suggested that people
would like to see improvement: 47% of people felt extremely, very
or quite satisfied. Possible issues include:

72% of people felt they had as much control as they wanted over
daily life and 47% felt they had adequate control.

39% felt they had as much social contact as they would like,
and 36% had adequate social contact.

61% of people thought information and advice very easy or
fairly easy to find, 20% found it fairly difficult or very
difficult to find.

Perhaps understandably in a county such as Northumberland,
satisfaction with getting around outside the home was an issue:
with 30% of people feeling able to get to all the places in their
area that they want; 27% acknowledging that at times this was a
challenge; 24% unable to get to the places they want and 19% unable
to leave their home.

Research indicates that there are just over 16,000 adults with
profound intellectual and multiple disabilities in England. They
may have severely limited understanding, great difficulty
communicating, health problems and other disabilities such as
impairments of vision, hearing and movement.

15-30% of people with a learning disability have epilepsy, and
physical disabilities such as cerebral palsy are common
complications. There is also a significant overlap with autistic
spectrum conditions (ASC). A quarter to a third of people with a
learning disability may have an ASC. Further information can be
found on the Adults with Autism page

At least 55% of people with Down’s syndrome aged 0-69 years are
affected by dementia compared to 5% of the general population aged
over 65 years. Most of the current group of people with Down’s
syndrome remain at home with family carers, or in minimally
supported living environments without the resources to cope with
increased dependency

There are now more adults with a learning disability aged over
45 than under 18 years of age and more living in the community,
rather than in institutional care and hospital.

Older adults with learning disabilities are more likely than
younger adults to rely on public funding for support and
accommodation. However, it is also true that people from younger
age groups frequently have needs related to physical disability,
complex and challenging behaviour and mental illness, including
those who are in contact with forensic services.

Around 15% of people with a learning disability will have some
form of behaviour such as aggression, destruction and self injury
which presents a significant challenge for those caring for them.
Around 15 per 100,000 of the general population will have severe
challenging behaviour. For Northumberland this would give an
estimate of around 37 people with severe challenging
behaviour.

Up to half of all adults with learning disabilities may have
mental health needs. Mental disorders are also more prevalent in
people with a learning disability. In particular rates of
schizophrenia are three times higher than in the general
population. 25% of people with a learning disability who live in
the community and 40% of those in hospital are likely to have
mental health problems. Further information can be found on the
Adults with mental health difficulties
page.

Northumberland has significantly more people with learning
disabilities than the national and regional averages (NEPHO
2012).

Data collected from GP systems as part of the Quality and
Outcomes Framework indicate that almost 1,500 people aged 18 and
over across Northumberland have been diagnosed with learning
disability.

34% of people with a learning disability known to services are
over 50 years of age, 12% over 65 years.

There are 100 people with Down’s Syndrome known to
services.

At the end of March 2012, 1328 adults with learning
disabilities were supported by care managers in Northumberland
(SWIFT).

856 people were receiving services commissioned from the social
care budget at the end of March 2012. Of these people:

113 were arranging some or all of their support themselves
using a direct payment.

218 were supported by home carers, many of them receiving very
substantial support – on average 48 hours of home care per
week.

184 were attending day care services, on average for three and
a half days per week.

241 were living in care homes

An estimated 505 people took delivery of items of disability
equipment supplied by the joint equipment store.

131 people received housing-related support was provided to 131
people

38 people received funding for a short-break

62 other people received funding for other services.

There are 32 shared lives (adult placement) carers offering
long term family based support to 43 people with a learning
disability (3% of people known to services).

There are currently 951 people of working age recorded as living
in settled accommodation (e.g. holding their own tenancies). This
equates to 76% of working age people known to services and compares
to 22% of people living in residential care.

Community Resource Centres have been developed to focus on the
needs of those people who have complex needs or challenging
behaviour. Alternative opportunities include outreach projects,
supported employment and further education and leisure
activities.

People receiving social care services in Northumberland were
surveyed as part of the Adult Social Care User Survey in England
2010-11. Overall views were very positive: overall satisfaction
with the care and support people were receiving was 93% - either
extremely (31%) satisfied, very satisfied (32%) or quite (30%)
satisfied.

This is reflected in the view that some key aspects of quality
of life were mostly in place:

People described their personal care positively: 53% feeling
able to present themselves in the way that they liked; 41% feeling
adequately clean and presentable.

64% of people felt they got all the food and drink they liked
when they wanted it; 30% felt their food and drink adequate.

60% felt their home was as clean and comfortable as they
wanted; 35% felt it was adequate.

62% of people felt as safe as they wanted; 30% felt adequately
safe.

However, views on overall quality of life suggested that people
would like to see improvement: 47% of people felt extremely, very
or quite satisfied. Possible issues include:

72% of people felt they had as much control as they wanted over
daily life and 47% felt they had adequate control.

39% felt they had as much social contact as they would like,
and 36% had adequate social contact.

61% of people thought information and advice very easy or
fairly easy to find, 20% found it fairly difficult or very
difficult to find.

Perhaps understandably in a county such as Northumberland,
satisfaction with getting around outside the home was an issue:
with 30% of people feeling able to get to all the places in their
area that they want; 27% acknowledging that at times this was a
challenge; 24% unable to get to the places they want and 19% unable
to leave their home.

The number of working age adults in Northumberland with a
diagnosable mental illness may be approaching 20,000 – though
commonly less than one in four require treatment from specialist
mental health services, and less than one in four of these have a
psychotic illness

1,508 working age adults in Northumberland were on the
caseloads of community mental health teams at the end of March
2012.

Community mental health teams report that 8-15% of the people
they work with have alcohol, drug or other substance misuse
problems in addition to their mental illness (“dual
diagnosis”)

Community mental health services in Northumberland generally
find that rather under 1% of their caseloads are from non-white
ethnic groups – broadly in line with the overall population. There
is a little evidence that these groups may be over-represented
among those admitted for in-patient care or compulsorily detained
in hospital, though the numbers are very small. There is national
evidence that black and minority ethnic groups have varying rates
of psychosis and can be treated differently from the white
population by mental health services.

At the end of March 2012, 308 people with mental health problems
were receiving services commissioned from the social care budget.
Of these people:

90 people were attending day care and outreach services
providing a range of statutory and non-statutory opportunities in
different areas of the county with a focus on vocational skills or
employment opportunities.

19 were arranging some or all of their support themselves using
a direct payment

49 were supported by home carers, for an average of 4.5 hours
per week

Housing-related support was being provided to 117 people

An estimated 79 people took delivery of items of disability
equipment supplied by the joint equipment store.

90 were living in care homes, of whom 4 were in care homes
providing nursing care, and 2 were accommodated under a contractual
arrangement made by the Adult Care Directorate but were paying
their own fees. 14 of the 90 people were living in care homes
outside Northumberland.

18 people had short breaks in care homes arranged by the Adult
Care Directorate

People receiving social care services in Northumberland were
surveyed as part of the Adult Social Care User Survey in England
2010-11. Overall views were very positive: overall satisfaction
with the care and support people were receiving was 93% - either
extremely (31%) satisfied, very satisfied (32%) or quite (30%)
satisfied.

This is reflected in the view that some key aspects of quality
of life were mostly in place:

People described their personal care positively: 53% feeling
able to present themselves in the way that they liked; 41% feeling
adequately clean and presentable.

64% of people felt they got all the food and drink they liked
when they wanted it; 30% felt their food and drink adequate.

60% felt their home was as clean and comfortable as they
wanted; 35% felt it was adequate.

62% of people felt as safe as they wanted; 30% felt adequately
safe.

However, views on overall quality of life suggested that people
would like to see improvement: 47% of people felt extremely, very
or quite satisfied. Possible issues include:

72% of people felt they had as much control as they wanted over
daily life and 47% felt they had adequate control.

39% felt they had as much social contact as they would like,
and 36% had adequate social contact.

61% of people thought information and advice very easy or
fairly easy to find, 20% found it fairly difficult or very
difficult to find.

Perhaps understandably in a county such as Northumberland,
satisfaction with getting around outside the home was an issue:
with 30% of people feeling able to get to all the places in their
area that they want; 27% acknowledging that at times this was a
challenge; 24% unable to get to the places they want and 19% unable
to leave their home.

Previous surveys have revealed a high level of satisfaction with
the services received: the manner in which they were treated and
involved, the way that services were coordinated and arranged
around their needs, and the information received. Carer involvement
also featured strongly.

However, the overall approval rating, though often in excess of
95%, was slightly lower for working age clients for mental health
in respect of safe levels of knowledge and skills. Also, lower
scores were received in relation to day service provision, which
has been under review in order to tackle the following issues
raised in the survey:

no defined pathway through the services so service users expect
to stay within the services

no clear pathway to employment opportunities for most people
with mental health problems

Adults with visual impairments

The prevalence of sight loss increases with age and the UK
population is ageing. One in five people aged 75 and over and one
in two people aged 90 and over is living with sight loss in the
UK.

The direct and indirect costs of sight loss are estimated to
have risen from £6.5 billion in 2008 to £7.9 billion in 2013. (RNIB
2009).

Figures for Northumberland in April 2013 showed a total of over
1,474 people registered as severely sight impaired, blind, sight
impaired or partially sighted.

There were 2,438 cataract operations for Northumberland
residents between Apr 2007 and March 2008 (the latest available ONS
data, 2009). This represents 12% of the cataract operations that
were carried out in the North East. Note it is not uncommon for the
same person to undergo two treatments in the same year).

Visual impairment increases significantly with age. 44% of
those registered with a sight impairment are either severe sight
impaired or blind.

Over half (54%) of those registered with a sight impairment
(803 people) are aged over 80 years old.

126 adults aged 18-64 who do not fall in other need groups are
also registered with severe sight impairments, and 115 with other
sight impairments.

Adults with hearing impairments

Adults with caring responsibilities

The 2011 Census figures for the UK show an 11% rise in the
number of carers since the last Census in 2001 - increasing by over
620,000 to 6.5 million in just 10 years

Carers UK estimates that we will see a 40% rise in the number
of carers needed by 2037 – an extra 2.6 million carers, meaning the
carer population in the UK will reach 9 million. The care they
provide is worth an estimated £119bn per year.

Every year over 2.1 million adults become carers and almost as
many people find that their caring responsibilities come to an end.
3 in 5 people will be carers at some point in their lives. (Carers
UK 20014).

About 3.4 million (58%) of carers are women and 42% are
male

One in five people aged 50-64 are carers which equates to over
2 million people in this age bracket

Almost 1.3 million people aged 65 or older are carers and the
number of carers over the age of 65 is increasing more rapidly than
the general carer population. Whilst the total number of carers has
risen by 11% since 2001, the number of older carers rose by
35%

A demographic group sometimes referred to as the 'sandwich
generation' typically care for older or disabled parents as well as
their own young children. The peak age for such dual-caring is
40-44 for women, and 45-49 for men. Women are more likely to be
dual-carers than men. (Agree et al 2003).

The 2011 Census showed that there were just under 600,000
Black, Asian and Minority Ethnic (BAME) carers in England. 2011
data indicates that a smaller proportion of the BAME population
provides care than the White British population. However the BAME
population is much younger and therefore less likely to have older
parents or other relatives needing care.

Across all carers:

93% said they provide practical help such as preparing meals,
doing laundry or shopping.

87% provide emotional support, motivation or keeping an eye on
someone either in person or by phone.

85% said they arranged or co-ordinated care services or medical
appointments.

83% said they manage paperwork or financial matters for the
person they care for.

71% of carers provide personal care like help with washing,
dressing, eating or using the toilet

57% carers were helping the person they care for with their
mobility – getting in and out of bed, moving around or getting out
of the house.

According to an NHS Information Centre survey:

Most carers (40%) care for their parents or parents-in-law

Over a quarter (26%) care for their spouse or partner.

People caring for disabled children under 18 account for 8% of
carers and 5% of carers are looking after adult children.

A further 4% care for their grandparents and 7% care for
another relative.

Whilst the majority care for relatives, one in ten carers (9%)
care for a friend or
neighbour.

Most carers care for just one person (83%), but 14% care for
two people and 3% are caring for at least three people.

Analysis from the latest (2011) census shows that the number of
people in Northumberland providing unpaid care has increased in the
last ten years from 33,609 to 35,697. The percentage of the
population who are unpaid carers has slightly increased from 10.9%
to 11.3%. The percentage of the population who are providing over
20 hours unpaid care has increased slightly from 3.6% to 4.2%

The recorded number of people providing unpaid care under 20
hours per week has fallen over the last ten years (a decrease of
356 carers). The recorded number of people providing over 20 hours
care continues to rise (an increase of almost 2.5 thousand in the
last ten years). Over 20 hours is the point at which caring starts
to significantly impact on the health and wellbeing of the carer,
and their ability to hold down paid employment alongside their
caring responsibilities.

Over 13,000 people provide over 20 hrs of care. This is an
increase of 22% in ten years.

Nearly 9,000 people provide over 50 hrs of care. This is an
increase of 17% in ten years.

The 2001 Census found 175,000 young carers in the UK. Some
13,000 are providing more than 50 hours of help a week. Recent
estimates are nearer to 700,000 young carers. The vast majority
(85%) of all children providing care are caring for one to 19 hours
per week. This is a wide range which means caring will affect these
young people in different ways.

The 2001 Census identified 806 young carers in Northumberland
aged 5-18 who provided care, some up to 50 hours or more per
week.

The National Society for the Prevention of Cruelty to Children,
concludes that 4% of children will be young carers at some point in
their childhood. 57% of known young carers are girls and 43% are
boys.

This amounts to at least 2,000 children and young people of
school age in Northumberland, but this is still considered a
conservative estimate. This figure is more than doubled taking into
account the transition into adulthood and young adults up to 25 who
take on the caring role instead of higher education/work.

More detailed figures showing the profile of carers in
Northumberland by location and age will be available soon.

People receiving social care services and carers in
Northumberland were surveyed as part of the Adult Social Care User
Survey. Views were very positive - overall satisfaction with the
care and support people were receiving was 93% - either extremely
(31%) satisfied, very satisfied (32%) or quite (30%) satisfied.